column logo algs

My son, Jackson, is getting ready to celebrate his third liver transplant anniversary. He was transplanted when he was 2 years old due to liver disease from Alagille syndrome (ALGS). While we are preparing to celebrate this exciting and emotional time, it comes with a lot of different reactions. Feelings of happiness for my son being given the gift of life, feelings of sadness for the donor family that lost their child, and feelings of celebration that we were able to make it another year on this post-transplant journey. 

This day is always filled with celebration and joy at our house. I start the day by decorating our dining/kitchen area with green everything—from tablecloths to balloons, streamers, banners, and more. We use only green silverware, plates, and napkins on this very special day. Our family usually stops in and out throughout the day, dropping off goodies to celebrate, as well balloons and cake pops. We also let the liver anniversary boy pick his choice of dinner for the night, and we always celebrate with cupcakes specially designed for the day.

As we head into this celebration, and my son is now 5, I realize more every day how he has no recollection of this history. He remembers certain things he sees in the pictures that we show him, but he has no memory of the actual events of that day or the weeks following the surgery. In a way, I see it as a blessing that he has no memory of such a harrowing surgery, and that for him, this is just normal life.

Continue Reading

But even though he doesn’t remember, we certainly do. As his parents, we will always remember the details of the entire transplant journey and we bear the weight of his diagnosis for now until he is old enough to understand the importance of specialist visits and medicines. 

Read about HCP resources for ALGS

The day of his liver anniversary is also a hard day for me and filled with sadness. I remember the family who was so selfless and donated their child’s organs. I think about their experience and their pain and cannot even imagine what those days leading up to the organ donation must have been like for them. I wonder what they’re like and what their tradition is surrounding the day they laid their child to rest. It is hard for me to grasp the concept that my child has a second chance at life because their child died. It’s a wild concept. I am so very thankful for them and always take a moment of silence to remember and thank them for their amazing, precious gift. 

Celebrating a liver anniversary is very special and important to me. It’s another year of life my son was granted. The celebration is for multiple things. One of them is celebrating another year that we’ve accomplished on this long journey. Another year that we can be thankful for many things such as no hospital admissions or no episodes of rejection. When I look back and reflect on the last year, I can thankfully say it was pretty easy and uneventful, minus the struggle with his EBV level. I am thankful for where we are on this journey, the team we have surrounding us, the support from our family, and most of all, the health of my son.